Neonates – are they worth saving?

‘I’m sorry, but the diagnosis is as we feared, would you like us to proceed with palliative treatment?’

This is the news that we as doctors dread to deliver and that our patients dread to receive. So what happens when you have to say this to the parents of a one-day old baby, seemingly entirely healthy aside from a distinct bluish tinge around the toes and fingers? When are we able to suggest that their baby is unlikely to live a happy fulfilled life, so it is probably best that we just keep her comfortable and let her slip away before it becomes too hard?

This is the kind of decision that is taken on a daily basis in the neonatal ward. As in the case above, babies are now frequently born with these life-threatening conditions only to be managed palliatively.

Baby X was diagnosed with hypoplastic left heart syndrome (HLHS). HLHS is a rare congenital condition where parts of the left side of the heart (mitral valve, left ventricle, aortic valve, and aorta) do not develop completely (1). After lengthy discussions with neonatologists, paediatricians, specialist nurses, discharge planners and a whole assortment of other medical personnel, the parents decided that Baby X should be treated palliatively post-partum, and the plans were drawn and signed. A definitive diagnosis was obtained at the post-natal echocardiogram and six days later, baby X slowly became hypoxic and died at home as planned.

Yet HLHS and similar conditions are by no means a fatal diagnosis in all cases. Baby Y, now 3 months old was diagnosed antenatally with hypoplastic right heart syndrome, a disease which carries with it a similarly poor prognosis as HLHS. His parents however decided to do everything possible to save him and a complex operation was performed when he was only a few days old to shunt blood into his pulmonary circulation. Soon after his operation however, Baby Y suffered low output heart failure and was put on extracorporeal membrane oxygenation. Now, seven weeks later, the battle is by no means over. Despite oxygen saturations of just 72% on air, he remains remarkably stable, but will require several further operations to optimise his situation. Even after all this invasive treatment, it is likely he will experience health problems all his life, and there just are not enough patients who have undergone the procedure to know how long he will survive.

So I ask, where do we as doctors draw the line? When should we advise a parent that it would possibly be more humane to let nature take its course? The ethics of such a situation can be better examined under the four guiding principles of medical ethics as pioneered by Beauchamp and Childress:

Autonomy: One could say that the baby has no autonomy, being ‘unable to express their feeling for the present or the future and who clearly cannot have indicated their preferences to their surrogates (2).’ Therefore, it falls to the responsibility of parents and doctors ‘to write their own versions of the child’s interests in life (2).’ If medical opinion remains split, then ‘it seems reasonable to defer to parents’ wishes (2).’

Beneficence and non-maleficence: In the cases of Babies X and Y, it is perhaps difficult to judge whether palliative treatment was implementing beneficence and active treatment, non-maleficence. These arguments bring into question the newborn’s tolerable limits of pain and long-term disability. Mason and Laurie wrote that, ‘only the benefits and burdens on the infant should be considered, not those on parents or society (3).’ Yet as highlighted above, the baby’s autonomy in these instances is at the mercy of parents and medical professionals, so it is inevitable that the benefits and burdens on parents and society will be brought into the picture however good the intentions. Ultimately, since it will be the responsibility of the parents and to a lesser extent, society to care for the baby if it were to be kept alive, it would be unreasonable to impose stringent restrictions to control such personal biases. Each situation is open to interpretation and what constitutes beneficence and non-maleficence is shaped somewhat by the parents and medical staff as clearly demonstrated in the cases of Babies X and Y.

Justice: This is a particularly relevant issue in the current hostile financial climate. Perhaps the resources could be much better spent providing that mother of three children with life-saving cancer drugs. Admittedly, treating neonates is not cheap: a single incubator and its associated equipment can cost up to £90,000, enough to fund four patients’ Herceptin treatment for a year or around 450 head CT scans. The health service needs some means of weighing these alternatives against each other and what is currently used is the Quality Adjusted Life Year (QALY) (4). It is perhaps surprising that neonatal treatments can be cost-effective based on this measurement, however recovery after treatment can be substantial and many good quality life years can be gained. Due to the plasticity of children’s systems, it is often the case that they are able to recover from severe illnesses more readily than their adult counterparts. Although it is difficult to envisage that any baby born as sick as to need multiple operations before they can even smile could grow into a healthy adult, the adaptability of children to adverse circumstances has meant this picture is not as rare as it first would seem. It is not uncommon to hear of such examples in the media and medical literature. Take the case of Oli Wood, who as a six month old successfully underwent a heart transplant operation and is still healthy and thriving (5) or Amillia Taylor who despite being born at only twenty-two weeks survived and was well enough to go home four months later (6).

Cost aside, I would argue that if we as a society allow sick babies to be delivered alive, then we have a duty to provide them with the medical treatment that would enable them to have the best chance in life. With the advancement of medical technology, it is perhaps inevitable that more and more premature and sick babies are surviving the immediate post-partum period. In 2005, 90% of the 11,657 infants born at less than thirty-three weeks gestation survived (7). Once they are born, they must be cared for and there is no doubt that without large amounts of medical, psychological and social input, these babies could face long-term suffering later in life.
We can apply these principles to the two cases presented above. Speaking to the acting consultant, it seems that medical opinion is entirely divided on the best course of treatment in these cases. In this instance, the best decision is to defer to the parents’ wishes and hence it was in the best interests of Babies X and Y to have treated them palliatively and actively respectively. As the consultant said, ‘I would have reassured the parents that they were right whatever decision they made.’

Yet sometimes, it is not always so straightforward. Like in any other situation, part of the role of the doctor is as a teacher, presenting the case of the neonate in a manner which the parents are able to understand. The aim of this is to enable parents to make a decision on behalf of their baby. If however there is an obvious preferable option for management, it can be said that presenting the argument in favour of this option is more ethical than providing parents with the impression that the decision is entirely open to them. This is particularly the case if the doctor intends to overrule the parents’ decision in favour of the option in the best interests of the baby. Although it may seem counter-intuitive, by framing the information in such a way, a consensus can be reached between all persons involved and bitter legal cases such as that of Baby RB (8) can be avoided, which only create further heartache for the family and distress to medical professionals.

In many countries, medicine is still practised in a paternalistic way, which can mean that families feel absolved from the responsibility of having to decide the fate of their child, perhaps reducing the negative emotional impact if the outcome of their choice were to be unfavourable. In the UK where patients are more accustomed to shared decision making between the doctor and patient, many families would feel dissatisfied if their right to influence medical decisions were taken away from them. The medical professional needs to sensitively gauge the extent to which individual families are prepared to be involved in the decision-making process and present information appropriate to this. Complete impartiality in presenting a case can only be used where the outcomes of the various options are finely balanced and the family is prepared to actively participate in discussions for management. In situations where one plan is obviously more favourable or the family are unable or unwilling to make the decision, it would be more ethical for the medical team to present the clinical picture in a way which highlights the option deemed to be in the best interests of the patient.

From the above discussion, it is evident that although the ethical scenarios in neonatal care are different from adults, the same principles can be applied. In practical terms, adequate training and support in neonatal specific care and communication with families is essential. Documents such as the recent working report by the British Association of Perinatal Care on neonatal-specific palliative care (9) should be made widely available. Only with such foundations in place can doctors tailor care towards each the family and optimally manage such difficult ethical dilemmas.